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Saturday, July 24, 2010

he "passes".....most of the time

My son, Mr. Literal (as I so lovingly call him...) has Asperger Syndrome. He is "on the spectrum" as they say, and I've accepted that. No really, I have. And the more I learn about that spectrum, the longer and wider it appears to be, with an amazing amount of diversity included within. The stereotypes of what an "autistic" person is like are no more correct in every case than trying to describe what a "funny" person is like, or a "creative" person, or an "eccentric" one. Get my point? And in the mind of much of the general population, autism = Rain Man. So since Mr. L can't count a pile of toothpicks on the floor, he doesn't have autism. Since he doesn't say "I'm an excellent driver" over and over, he must be ok, right?

Truth is, Mr. L passes.....most of the time. If we haven't told you (or if we haven't "come out" to you, as I like to say), you probably wouldn't know. He is so capable, so normal in the eyes of most people, they would have no idea of his diagnosis and might argue with me if they were told. We took him to the highly-recommended pediatric dentist in the area that is known for their work with special needs kids (i.e. dental patients who are VERY averse to anything remotely connected to dentistry), and when I called to make the appointment, I told them something vague like "he has a mild form of autism". When we arrived and were taken back to the treatment area, I saw their computerized schedule for the day on the wall monitor. Mr. L's name was highlighted in red......what does that mean? OMG autism be careful don't move too fast don't freak him out don't cause a Chernobyl-style meltdown which will permanently scar the psyches of the other patients as well as the staff, that's what it means.

To their credit, they did a wonderful job and he was amazingly cooperative and willing to be treated. :) He did so well, though, that a hygienist even asked me afterwards if I was "sure" about the autism, because he did so great and she just didn't see it at all. She just saw an angelic, blond-haired boy who listened, cooperated, and was a model patient, so obviously he's not autistic, right? He "passes" in most places.....school (to some extent, at least with peers), church, sports teams he's played on, and in public. We tell when we need to, and sometimes not until after the fact (after the sports season ends etc), but otherwise we don't.

As I have become more knowledgeable about the topic though, I have begun to develop "ASDdar" (not to be confused with radar, gaydar or the rest). I might be wrong sometimes, and I don't ask when I'm not sure, but there are times when I see people in public and just have a feeling, an inkling, just by little signs or clues that I pick up on. Most of the clues jump out at me because they remind me of Mr. L. When I see a boy of older than 5 or 6 years old willingly walking in a public place while holding Mom's hand, I get that feeling. When the teenaged bag boy at the grocery store asks me a LOT of questions about one topic, talks incessantly about one thing, or just has an unusual cadence to his voice, I get that feeling. And I try not to worry about how those kids are treated, and what people think about them when they don't know the truth.......that kid is "weird", what's wrong with him, why does he talk that way, etc.

I know that we are fortunate in terms of all that Mr. L can do. He can communicate, he can sing beautifully, he can read and write, he can play the Wii like nobody's business, he can do so many amazing things and his diagnosis has not been a gigantic obstacle to him (at least not yet). But it's there, and we do still have Chernobyl meltdowns sometimes, and when that happens it's very hard for the people around us to understand and cope with, because to them he's just a regular boy who happens to have an unusual voice, an obsession with sports statistics and a knack for remembering things that everyone else has forgotten.

With the huge growth of ASD diagnoses in the last few years, more kids like Mr. L are among us than ever before, and the numbers will continue to increase. And some will "pass" undetected, and some won't. Regardless, each of those people is someone's child and is deserving of our respect and of an equal opportunity to reach his potential in this life. After living as an "ASD parent" for around 7 years now, I find that sometimes the word autism opens doors......people are nicer, or at least more willing to give you and your child some leeway about what is expected.......and sometimes it closes doors. Your child has the scarlet A, he can't be in this group or play this game or handle this or that. Should that word even matter, though? Mr. L is Mr. L, with all of his charms and quirks, regardless of if he has ASD after his name or not. Some people have PhD, some have M.D. or J.D. , my son has ASD. But if you don't know our little secret, please don't judge him, or us, when you see something that doesn't seem right to you for an almost-9-year-old boy. He works hard every day, and so do we. He doesn't understand why certain things are ok and others aren't, or why life isn't just as cleanly black and white as he wants it to be, but he's trying and he wants to fit in. If you see him, give him a chance to do just that, ok? Thanks.

5 comments:

You've captured our lives with my son! He too "passes" but it is increasingly strange how much of it he PASSES on to us...for the better. Is it a gift? Of course not. Is it special? Yes, but with new meaning given to the word. Is it painful? Hard? Brilliant? I love my boy with a love I'm sure that's shaped by intense trials of faith, hope and...clarity.

My 11yr old's dx at 2.5 was non-verbal mild PDD, it is now mild NLD, which means that most of the time he "passes" for normal. The problem with giving up the "a mild form of ASD" on his school paperwork would mean a loss of OT and Ont PPM 140 - Social and Behavioural Skills. So, he passes... well... what about the severe claustrophobia, what about the poor short term memory issues that we would only have found out about b/c with the ASD dx at Gr 4 we got psychometry and s/l testing (which they initially we're going to do b/c his grades are "average"), what about the fusion, what about learning how to work in groups? and a million little things b/c his Mother decided that "passing" wasn't good enough.I don't usually say anything to "others" anymore. It isn't necessary. But for him to get the best education there is.... I'm leaving the paperwork alone.

My children aren't autistic (they're what used to be called "normal" but are now, I believe, called "neurotypical) however, my eldest son is majoring in IT studies and he has several friends and co-workers at the college's computer help desk who seem a wee tad bit autistic.When I take my laptop to the A*pple store for repairs I can spot a couple of possible autistic folk among the employee. Computers are just perfect for autistic people. One thing I wonder is why do so many autistic people speak with an unusual cadence or inflection? Do you know?

Through better diagnosis and earlier detection, some many more children are going to get treatment sooner.I've seen an increase in Asperger Syndrome patients in general. I don't know if it is really an increase, or just proper diagnosis at a younger age than even 20 years ago.

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